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Mystery condition: I react to ALL Food, herbal supplements and spices - Why?

Discussion in 'General ME/CFS Discussion' started by Fogbuster, Jan 29, 2015.

  1. Fogbuster

    Fogbuster Senior Member

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    I have had this issue for over 4 years now and am totally at my wits end with trying to work out what is wrong with me. Mainly because my cognitive impairment (brain fog) is so chronic that I am completely unable to think and process any thought. My working memory is completely shot also.

    When I ingest foods and other chemicals, immediately a stress response goes off in my body and sets off what I can only describe as my wired symptom. It's an uncomfortable and mildly painful numb tingling sensation (very like pins and needles in feeling) streaming through my body as if something biochemical has been triggered and released into my blood stream after ingesting the chemical/s. My pupils dilate and it activates my nervous system. It puts me in a state where I feel stressed and on edge, whilst making me feel crappy. It impairs my cognition even more than it already is. The more extreme my wired symptom/stress response is, the more stressed I feel and the more extreme my symptoms get.


    • Worst offenders? (In order)


      • Cigarettes
      • Marijuana
      • Histamine rich food
      • Spices
      • Alcohol
      • Caffeine
      • Gluten/Yeast



        My symptoms:



        Sound/light sensitivity, popping ears, shortness of breath, hypertension, twitching/spasms, shaking, sinusitis, aching joints (wrists, ankles, knees and shoulders**), - Clicking/popping joints (especially my knees, which pop every time I walk), Regular raw pain feeling in stomach (When you peel off a scab and there's that shiny bit of sensitive skin underneath). That's what it feels like when i press down on stomach., chronic brain fog and fuzzy vision (translucent out of signal black/white tv fuzz) and getting hypoglycaemic very easily. Literally half a teaspoon of Sugar is enough to set off the wired symptom.


        • My worst symptom:


          Chronic Brain Fog - I have read many, many cases of people experiencing this symptom but nothing to the extent of how extreme and debilitating mine is.The extent of how chronic and debilitating it is, is something which my friends/family/doctors still cant quite comprehend. It is so chronic I am completely unable to think, access any thoughts or memories. I can't process more than 4-5 words in a sentence, completely unable to process a paragraph, sit back and think about it, it's not a matter of hazy thinking, I am completely unable to think AT ALL. The best analogy I can find is is it's like solitary confinement in the mind, no activity, just dead space.My quality of life and the boredom I experience is frightening. Completely unable to process anything properly - books, films, music, conversation, again just dead space, no escapism.



          What has helped with my "condition"?



          Diazepam - reduces my "reaction" to things significantly to a point where I could almost live a manageable/mildly functional life with it. Because there's much less wired symptom it helps my ability to process better and appear more functional in everyday situations, but doesn't improve the BF.



          Cold air exposure
          - If im very symptomatic being outside for 15 minutes or more significantly improves my wired symptom, ability to process information and general symptoms like sinusitis. I have heard cold air exposure reduces glutamate exitoxicity - so something is triggering it, but I'm not exactly sure what it is...



        • Elemental diet - Being on this for 8 days reduced my reaction to normal foods (gluten, alcohol, ready meals & dairy based foods) considerably and normalised my stress response and improved BF by about 40%. I felt very calm and zen after and was MUCH better at handling stress because the stress tap wasn't on anymore. Eating "normal" foods for a couple of weeks made me go back to square one again though.

        Thanks for reading, any ideas are truly welcome.

        Best,
        J
     
  2. taniaaust1

    taniaaust1 Senior Member

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    They are very common food intollence things.You'd probably find postive tests for food intollences with these if you went to a naturopath and was tested.

    ..............

    Improvement to cold air may be due to low blood volume issues eg the cold air if one has low blood volume causes the blood to come away from the skin surface so more gets to the organs eg brain better. Low blood volume can also be found in autonomic dysfunction problems eg Postural orthostatic tachycardia syndrome for example. Note.. autonomic dysfunctions can worsen with both chemicals and certain foods if someone has intollerances,they can be a trigger.

    Another thing.. if you have also something like hyperinsulinemia in which you will then be reacting to carbs in foods and sugar eg half tsp sugar sets you off.. ..insulin issues can go along with having worst autonomic dysfunction etc. My specialist (a leader in that field .. Dr Alan Gale .. he has got a website about this online somewhere) calls hyperinsulinemia the pandoras box of illness as it can cause so many different problems.

    My hyperinsulinemia needs my diet so its lower in carbs then a diabetes otherwise I can get SEVERE EMOTIONAL reactions to food.

    Those who have hyperinsulinemia can get hypoglycemia as the abnormal insulin spikes can then give one low blood sugar.

    I think you need some good testing done... A 2hr glucose tollerance test with the insulin level also recorded to see i you do have an insulin issue. The blood needs to be transported to the lab on ice as the insulin can degrade during transport otherwise and if that happens the test result may be wrong.

    best luck. You may really need to seek out a leader in that field if your test shows you do have this issue as most doctors are completely unaware how severely hyperinsulinemia can affect some people.
     
  3. ahmo

    ahmo Senior Member

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    Are you still using things from your worst offenders List??? Gluten also includes a whole group of gluten cross-reactive, things which the body recognizes as gluten. These alone could be keeping you in a terrible state.:wide-eyed: Same with histamines...:(

    - Clicking/popping joints: possibly sulfur intolerance. My joints were very loose, glitches in shoulder. When I stopped sulfur, this stopped...one of the symptoms of Pyroluria

    Stop eating sugar! have you checked your thyroid?

    Sorry to sound so drastic. I'm on an extremely limited diet, and I'm healthier than I've ever been in many ways. I've had to move around my mental furniture to come to terms with all the things that I can't eat...but I had to do that when I could no longer participate in life as I knew it. Sorry you're so unwell. :hug:



    http://www.thepaleomom.com/2013/03/...re-eating-gluten-even-after-giving-it-up.html

    http://autoimmune-paleo.com/AIPavoidlist.pdf

    http://aiplifestyle.com/what-is-autoimmune-protocol-diet/

    http://www.histaminintoleranz.ch/download/SIGHI-FoodCompatibilityList_HIT(EN).pdf

    http://livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/

    http://www.mothering.com/community/t/1053485/sulfur-sensitivity...very interesting conversation


    http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria
     
  4. drob31

    drob31 Senior Member

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    Is hyperinsulinemia triggered immediately by food? I seem to have a reaction immediately when I eat; cold hands, diffuse hair loss, brain fog (sometimes), tiredness, fatigue, etc. It seems to hit really fast like before the food even gets digested. I just thought it was fluxuating cortisol levels in response to insulin. My insulin is always normal on a fasting blood serum test, and my cortisol is high normal.
     
  5. drob31

    drob31 Senior Member

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    The paleo mom link references the Cyrex Assay #4, which tests for gluten cross reactive foods. I'm doing the #5 first which is autoimmune, and they also have one for other foods and even chemical sensitivities. I'm suprised no one on this forum has had any of them done (or maybe they have?).
     
    ahmo likes this.
  6. ahmo

    ahmo Senior Member

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    @drob31 I was shocked:eek: to discover that my thyroid mediation contained cornstarch, gluten cross-reactive!:mad: Now using compounded T3:)
     
  7. drob31

    drob31 Senior Member

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    That's very interesting. I noticed t3 drove my cortisol through the roof.
     
  8. ahmo

    ahmo Senior Member

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    Getting off decades-long synthroid and onto T3, after 5 years trying all other combos of natural thyroid, T3/4...was the first thing that helped me.
     
  9. maryb

    maryb iherb code TAK122

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    @Fogbuster sorry to hear about your symptoms.
    I supposed you already know that you have to drop as many of the substances that worsen your symptoms,if you want to improve. I know its hard, I've done it so I'm talking from experience.
    Maybe some problem with your environment as well if being outside relieves some of the symptoms, big connection with mould and intolerances. Something to check out.
     
  10. AbbyDear

    AbbyDear

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    Sounds familiar @Fogbuster , you are not alone... For me you can add massive pain, and insomnia...and I am quite certain it is not due some psycho-bable crap I found nothing to help, cept of course avoiding the worse offenders. Not sure about additional testing, I have already spent a gazillion dollars with no help.

    Good luck and keep us posted if you find a meaningful solution.
     
  11. gregh286

    gregh286 Senior Member

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    did you try leaky gut test yet.
     
  12. justy

    justy Donate Advocate Demonstrate

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    Very similar issues here. Trying low histamine diet, which is very hard when veggie like me. But is hass meant my dairy has increased and that's not good for my asthma. Fish is out because its high in histamine. I am living off of crackers and cream cheese and baked potatoes with stir fried vegetables. At first tiny amoutns of sugar would set of what you describe - I also get a tight feeling in my neck and jaw when this happens and weird feeling in my throat.

    Now it is also happening if I don't eat enough food regularly - a bit like hypoglycaemia. I started the low histamine diet to help with the constant itching that was set off by an allergic reaction to an antibiotic, but now i don't know what to do. If i cut out dairy and gluten as well i would only have vegetables (well not all vegetables) left and a few beans.

    I have also tried antihistamines but they don't really help.
     
  13. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    They have other medications, but you might have to get them at some kind of specialist. I do not know if they are meant to help you eat histamine foods. This sounds rough. Best wishes to you and to @Fogbuster and everyone else. It's really hard to not be able to eat much....
     
  14. Jerry C

    Jerry C

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    Hello anyone figure this out yet been dealing with crazy symptoms from food for almost 2 years now i even try to take supplements for leaky gut candida hcl ect i react to it all i can only eat smal amounts of meat and some cabbage i thought i figure it out i react to corn stuff and dairy stuff and eggs fruit flax seeds but everything i try i have some kind of reaction but i manage my best with small amounts of meat i get a reaction if i eat too much and cabbage i am lost on how to fix the problem and doctors are no help any help would be good i was on a ppi that seem to cause this i also took antibotic around the same time for h pylori i await for a reply Thanks
     
  15. Fogbuster

    Fogbuster Senior Member

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    Yes mostly, at least for myself. Will PM you now.
     
  16. Jerry C

    Jerry C

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    thanks sent one back
     
  17. M494MC

    M494MC

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    Fogbuster, could you send a message to me as well. I have also been dealing with similiar symptoms.
     
  18. M494MC

    M494MC

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    I am trying to figure out how to use hashtags. @Fogbuster could you send me a message about what has helped with your symptoms?
     
  19. bluelight

    bluelight

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    I also get a lot of the same symptoms I try to leave breakfast for as long as possible as eating can just wipe me out for hours at on end. Diazepam used to help me a lot as well (2mg) but my Dr wont give me them anymore encase I get addicted to them she said.
    I fantasize about foods I can no longer eat as my diet now is so restricted. Last Christmas I felt obligated to except a alcoholic drink with a friend, within seconds of the first sip it felt like all the veins in my arms were on fire and I was being pulled out of my body. I was stumbling desperately trying to make my way to the pub door to leave and get a taxi to go home. my body temp dropped quickly and my whole body was shaking. I fell over onto a table of drinks knocking them over - everyone was staring at me wondering what the heck it was I was drinking to be so drunk (I wasn't, I was just ill). I wont forget that day - very scary stuff.
     
  20. digital dog

    digital dog Senior Member

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    Have you recently (two years or more) been on or off drugs?
     

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